Weird new symptom - feels like a moment of losing focus and swaying...

[TeganSara]

I have a new weird symptom and I have no idea what it is. Twice today I have just been doing normal stuff (standing up and sitting at the PC) when very suddenly my eyes lose focus, I feel myself tilt like I will fall over and a funny feeling comes over my head, like how I used to feel when I was anemic and I bent over and I would feel like I was going to black out. Only I'm not bending over and I don't actually have that blackness come over my vision. It's actually gone in a second.

I have had loads of weird niggling symptoms lately and I have been thoroughly tested - every thing is fine, TSH, blood sugar, blood pressure. I feel like it would be another waste of time to see the doctor again and I'm sure they would roll their eyes at me.

I'm really kind of worried it's a stroke-like event. How can I tell?

I have had a rapid heart rate recently and had a rheumo say I have slightly sticky blood in the past (4 years ago!) so any light shedding would be appreciated.

[radd]

TeganSara,

Vertigo and balance issues are common with low thyroid hormone. Doctors don't take any notice and expensive private specialists diagnose POTS or Meneire's Disease (inner ear) or one of the many other syndromes for which there is no treatment//cure ..... except to optimise thyroid hormone, nutrients and try to feel well again.

In the past I have felt so sea sick, I had to hold the walls just to walk to the loo... Now a days I feel much better but a loud and dramatic pressure change in my head acts as a reminder of a past gone and a mindful present.

Add the tinnitus that comes with alcohol or stress, and you have what many of us are feeling.....

Don't know about sticky blood but there is forum for Hughes Syndrome.

[hebden in reply to radd]

Thats interesting radd. I had a feeling the vertigo I have been experiencing since april was thyroid related. I was sent to ENT who said Id had labrynthitis and it went off for a week but has now come back especially when looking up, lying down or looking right. Sometimes it comes out of the blue. My tinnitus has also got louder lately. Im trying to optimise nutrients and after a BH blood test showed hypothyroidism after GP typically ignored it yet again I got thyroid s which I have started really low on qtr grain and not feeling any different yet but I hope to soon. Thanks to all generous helpful people here. Joolz.x

[radd in reply to hebden]

hebden,

A quarter grain is only equivalent to about 9.5 T4 and 2.25 T3. A low dose can sometimes make a struggling pituitary gland take a little rest so you end up producing less thyroid hormone than before medicating.

However, you need to introduce NDT slowly in order that your body will tolerate the T3. Otherwise too much un-utilised thyroid hormone can build up with negative implications.

Have you had T3 tested yet ? You will need to test at some point to ensure you don't over medicate.

.

Private labs testing

thyroiduk.org.uk/tuk/testin...

[hebden in reply to radd]

When vertigo started in april I wasn't taking anything but vit d3 prescribed by rheumy. It wasn't until I had Blue Horizon 11 blood test done and I posted on here that I started B12 and vit k2 then just over a week ago I started thyroid s qtr grain. I lost my job through ill health so cannot afford to get tested privately too frequently. The last test I had was my birthday gift money. I just wish I could find a GP who will listen to me.

[radd in reply to hebden]

hebden,

Your previous results show together with low T4 & T3 thyroid hormones, a TSH slightly over, indicating the pituitary gland is having to work harder caused by possible early onset hypothyroidism as shown in your symptoms.

I wouldn't go higher than 1-1.5 grains without testing T3 as too much will have negative connotations. 1 grain equals the equivalent to 65mcg T4.

Elevated CRP & ferritin indicate inflammation within your body and are commonly seen on this forum in Hashi sufferers but you don't have high thyroid antibodies so do not have Hashimotos. You must have something else going on.

Others have previously commented re your deficiencies and supplementing.

I am sorry to hear you have lost your job but well done for assuming responsibility for your health. This is something many of us on the forum have been forced to do. Members will give you lots of support.

[Hidden in reply to radd]

-Right before my diagnosis I had a bad sinus infection, and after it cleared ujp I had vertigo so badly that I couldn't stand up. It continued to affect me quite badly until I began thyroid replacement. One day I could barely get out of my car at work, and when I did, I walked away with the car still running. I had extreme brain fog, which for mew when hand in hand with the severity of the vertigo. I am in total agreement that most doctors don't think of it as a symptom at least until it's been ongoing for a while and can rule out other reasons. I am blessed to have a physician that not only listens, but remembers to ask when I go in for my next visit.

I am here to say it will get better for sure, but yes, it is something you will always be mindful of because when you get something like the common cold, symptoms seem to re-appear. Also (at least for me) sleep is very important, I need at least 7 hours to keep vertigo and brain fog at bay.

[kyoto49 in reply to Hidden]

Thats really interesting because my issues only appeared after I'd had a a very bad upper respiratory virus that ended in me having Eustachian tube blockages both sides and having to take the steroid prednisalone. 1 year on and I live in great fear of getting any sort of cold virus now and will do anything to avoid colds and bugs. And it's since this virus that I've never felt right, even with everything in range, the lightheaded, brain fog and skin tingling never leaves me, and it is worse when tired.

[Hidden in reply to kyoto49]

oh, I'm sorry to hear that. I hope things get better! And you doctor knows your symptoms, correct? If so, night be time for a little doctor shopping.

[kyoto49 in reply to Hidden]

Doctors lol I've seen every single one of the doctors at my practice, all 6 of them and none show the slightest bit of interest. One suggeted HRT, the rest just nod vaguely. My friend is also a Dr and she says that she wouldn't know how to treat me either. Says she only found out 2 years ago that being hypo means avoiding certain foods. It's all very depressing.

[Hidden in reply to kyoto49]

oh my goodness. Depression can really affect everything.

[TeganSara]

Thanks for your answers. The doctor said I was fainting and that it was most likely my heart. If I faint again he'll give me a heart monitor. Sounds dangerously like fobbing off to me...

[puncturedbicycle in reply to TeganSara]

Well if he was truly fobbing you off he'd pat you on the head and tell you it's anxiety so I think it's good he's looking at stuff that matters like your heart, even if just to exclude it.

All kinds of things can cause a greyout. Maybe he wants to rule out your heart before he sends you for other tests. I mean, fainting is dangerous if you're in a precarious situation (on the stairs, driving) so he really must pay attention to it.

Any thoughts about your rapid heartbeat? Is it possible your meds are a little bit out?

Sadly next time it happens you may be better off going to A&E (along w everyone else who can't get a diagnosis from the gp).

[TeganSara in reply to puncturedbicycle]

I did go to the A&E and it was the doctor there I spoke to. I posted about this on the Hughes forum and they suggest POTS may be an issue. I have been doing some unhelpful things for POTS lately in the attempt to lose weight so I think I'll give up the intermittent fasting and see if that helps.

They also gave me a helpful link on how there is another way connective tissue diseases can be linked to interrupted cardiac rhythm (essentially what the A&E doc said) so I will go back to the GP and ask for specific antibody tests. I have the highest ANA result (1:2560) and Undifferentiated Connective Tissue disease, so I could be developing Hughes or it could be POTS. Rapid heart rate is a feature of POTS. My last TSH was about 0.5 but my doc was happy with it. I've lost 5 pounds since then so I could be slightly pushing it with my dose. I know from the last 10 years than my dose fluctuates with my weight.

[puncturedbicycle in reply to TeganSara]

I extend my empathy and wish you luck. There's nothing like a constantly changing health situation to frustrate and destabilise your sense of well-being.

Having reread my earlier reply I apologise if it sounded like I wasn't taking your feeling seriously. I meant that yes, they often don't look in the right place and we feel fobbed off and sometimes they actually refuse to acknowledge we may have an actual physical health problem and tell us it's all in our head. I'm convinced that the A&E waiting times are deteriorating because our gps are telling us there's nothing wrong with us and we have to resort to emergency measures, and often there they do the 'basic' health care (full physical examination etc) the gps seem to have dispensed with.

[TeganSara in reply to puncturedbicycle]

I didn't take it that way at all I was being a bit dopey and answering your comment instead of updating all my "what happened next" at the bottom. I think what I said probably sounded blunt, so sorry if I gave you a weird vibe.

I am pretty skeptical about docs, having seen so very many and not getting very far so it's good to be reminded not to be so skeptical.

Yeah, I really wish someone would do a really thorough examination just to allay some of my anxiety. Sometimes I wonder if all/most of my symptoms are anxiety based. This was one of the few where I thought I really have to get this checked out because because as you say I could pass out while driving.

[puncturedbicycle in reply to TeganSara]

I thought that about my reply before I read your reply so it deffo wasn't anything you said. You weren't blunt.

It's swings and roundabouts isn't it, you know something is off w your health and if your fears aren't addressed it does then genuinely cause anxiety. Ironically if it was anxiety that would be the better option.

I was wondering if there is a specialist who might know more about the whole Hughes/POTS thing rather than seeing various specialists who end up being like the blind men and the elephant.

[Dramlouie in reply to TeganSara]

`I had all sorts of symptoms, been to all the doctors in the practise, fobbed off with you have had your time you will have to book another appointment, then wait another month or more to see the same doctor. It doesn't do much for the worry of it all. I paid the money and saw a naturopath, oh my, 1.5 hours of just listening to me, talking things through, checks, I needed blood tests done, gave me some supplements and went back feeling so much better. I feel so confident in him, he knew his stuff. He discussed what was wrong and said I could ring him if I had problems. I have previously been to A&E and all they did was an ecg and told me to see my doctor. Its well worth the money and the journey.

[kcwins88 in reply to TeganSara]

Think about this possibility. It recently happened to my husband.

You mentioned blood clots. Has your doctor implanted any stents whereclots were found ? if yes was a test done prior to the implant device procedure for allergy to the metal components they are made of.

Here is peobkem if you have not been able to wear cheap jewelry you probly are allergic to Nickel. Stents all contain different percentages of the component.

Your bloodwork. Notes hypersensitive.

If allergen in system in can cause this whatt may have been very mild in past to multiply l reaction like 100x

Also symptom. Recognised

[TeganSara in reply to kcwins88]

I don't have stents but thanks for pointing this out., I do react to cheap jewellery.

[Framboise]

How is your neck TeganSara, are the muscles very tight? I spend my day at the computer and when my neck muscles get really tight I get similar sensations. I can feel suddenly faint, slightly dizzy and off-balance, empty-headed, my eyes can jump around and the focus goes and sometimes I also get palpitations. It's horrible when it happens and used to really worry me and I did once go to A&E in the middle of the night in case it was a stroke. In my case, after a lot of medical testing and trial and error I found it's to do with the muscles around the base of my skull and the muscle from under my ear to my collar bone - the sternocleidomastoid. That muscle is known to cause such symptoms and I've put a link about it below, but so are low thyroid hormones and to add to the confusion low thyroid hormones also contribute to tight muscles, so it can be a real vicious circle!

It's very important to be tested for all possible causes and to make sure your dose of thyroid hormones is enough, but, if your doctors don't find any cause, and if your neck is tight, stiff or painful, you could try a good physio or osteopath to see if they think these symptoms could be coming from your neck. If you do try that make sure you tell them you are taking thyroid hormones, it does make a difference to the muscles.

natural-solutions-for-muscl...

[TeganSara in reply to Framboise]

Oh, all my muscles are tight! I've actually had a lot of pain in the base of my neck at the rear over the last few days.

[Angelic69]

If you don't mind me asking how old are you.

[TeganSara in reply to Angelic69]

I'm 41

[Angelic69 in reply to TeganSara]

how olds your youngest child if you don't mind me asking

[stoneym]

I get sticky blood ( I think it is caused by 18 years left on a high dose Birth Pill) and I've had 2 blood clots. I had blood tested in London 10 years ago and it was so bad, it clogged up the machine. GP at the time said "I don't know what you mean; there's nothing wrong with your circulation !!!" which is why I took myself to London and paid for a private test.

The natural doctor told me to take Fish oil, ginger and garlic and it works for me.

[TeganSara in reply to stoneym]

Oh dear, so not surprised at your doctors reaction

[kyoto49]

I have this, it's vile :(. It feels like I'm on a ship and the world is moving. I had it really badly in Montreal recently, so bad that I actually thought the floor was moving and asked my teenage daughter to confirm. When she said the floor wasn't moving it was quite a scary moment as I felt like everything was moving. It's a bit like standing on a bouncy castle :(. If anyone can shed light I'd be most grateful although I assume it ill just one of those things I've got to learn to live with like constantly tingling body all over, and generally weird feelings. My vitamins are all top and my thyroid levels are all in range!

[Hidden in reply to kyoto49]

I wrote a response above^ I hope it will help you!

[Warrior75]

I'm suffering really bad with vertigo at the moment I was given exercises to do which help a little and I'm having an eye test tomorrow just so the dr can't fob me off when I go back next week

blurry vision is bad and I've nearly fell over twice today

I've even had a blood test today it's really been upsetting today I'm hoping to get to the bottom of it next week

[kcwins88]

Sounds to me like your equalibrium is out of whack. Do you have a slight ear infection ? Or. Do you take any medication for thyroid or seizure activity or for that matter any medication where a possibiity exists that either by over prescribed by doctor or taken more than recommended by yourself ? It is possible to over toxify meds that can definately cause loss of equalibrium as if to give the appearance of someone who may have had a couple drinks to many.

[TeganSara in reply to kcwins88]

I only take thyroid meds and nothing else but thanks for your input

[MissT21]

Dont know if this is useful. I have this every other day at the moment and doctor thinking may be to do with my pituitary gland. my prolactin level is high. I am having a scan on pituitary on Friday. Other symptoms headache, weight gain, loss libido.

might be worth asking to have prolactin tested

[saadiyaqazi]

hello dear

sory fr u.bt dnt worry.i got this issue.visited a no of doctrs.ent says its anxiety.medcn says its bppv.some say vitd def causes vertigo.i had vit d def.bt now trying to cover it up.still vertigo is thr.aftr a lot of search on internet i learnt its only anxiety causing me swayinv sens.

jst try to chk it out is it related to ur anxiety?

once it starts with vertigo bt that single atacks creates such a panic dat it becomes habbit of swaying.

try to manage stress and it all vl b over.

gudlck😊